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Topic: Funky Symptoms

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: May 10, 2006 01:27PM

AnneW wrote:

Hey all,

Here's what I'm experiencing: tenderness along my back muscles from my shoulder to the bottom of my ribs. Like I worked out really hard but didn't. The only sign of swelling is perhaps a tad more indentation from my bra, both on my shoulder and under my arm to around the back a little ways.

And my classic sign of mild LE--my index finger tip tingles.

No redness, swelling, no infection or cuts or nicks.

I'm 4 years out from lumpectomy, axillary dissection, and rads. I work out religiously, and have since my original surgery. I lift weights and swim and rock climb. The ONLY time I've had a hint of LE was right after rads & hiking in the cold at high altitude. (That hasn't bothered me since.)

I started MLD twice a day two days ago, no results yet.

So, I hear there's a type of LE that affects your trunk...anyone else experience this? Any advice, other than continue MLD and/or find a good LE therapist in my area?

Anne
2002 IDC stage 1, grade 1, rads & AI Dx 9/18/2007, ILC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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May 10, 2006 06:49PM NPat wrote:

Anne,
It sounds as though you may have some truncal LE. Go to www.mylymphedema.com to locate a therapist near you. I have truncal LE. I first noticed that the seams from my bra made more of an indentation on my left breast. I had axillary swelling and swelling below my left shoulder blades. My breast burned and I even developed a mastitis. Massage helps and wearing a good bra with wide straps, no wires, higher back and bodice and higher under the arms. I wore a Bellisse for several months but my swelling was not controlled between my breasts. I found several Anita bras that work for me. Juzo and Solaris make them also. Read some of Binney's posts... she is very informative and has truncal LE also. Take care.
Pat
NPat
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May 10, 2006 09:04PM Binney4 wrote:

Hi, Anne,
The problem with truncal LE is finding a therapist who has experience treating it. Check out NPat's web site and then call to ask specifically about their truncal LE experience. The MLD massage for truncal has a few additional "tricks" to it that can really make a difference.

I'm really sorry you're having to mess with this, but being onto it so quickly will make it easier to handle and treat.

Very gentle hugs,
Binney
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May 11, 2006 08:03AM AnneW wrote:

Thanks for your comments. I can find a couple Vodder-trained folks in my area, and I will ask specifically about their experience with truncal LE.

In the meantime, I am significantly better today, so my MLD must be working!

I'm just blown away that this is happening so far out from treatment and with no particular precipitating incedents. But, that's the nature of the beast, I suppose.

Anne
2002 IDC stage 1, grade 1, rads & AI Dx 9/18/2007, ILC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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May 11, 2006 08:06AM Hattie wrote:

Anne, I hope you had a happy birthday yesterday in spite of funky symptoms. Hope this year is filled wtih outdoor and other pleasures for you.
take care,
--Hattie
life is good
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May 13, 2006 05:19AM AnneW wrote:

Thank you so much, Hattie!!

It was a good birthday overall, even though I had to put my old cat down the day before, and lost my "favorite" kitty to the ravages of the wild a few days before that. But I had great support from family and loving friends...

My symptoms seem to be subsiding now, as long as I stay on top of the MLD twice a day. I was able to climb yesterday, and I think that exercise actually helped flush out some toxins--I am not a bit sore from it today, and the previous areas are amazingly better.

I tell you, this little "scare" has certainly gotten my attention. It's not just about infections, which I'm so diligent to avoid. I don't agree with a lot on the LE websites, but that's for MY experiece only. This crazy condition can come out of nowhere to bite you on the ass. I have the utmost respect for it!

Anne
2002 IDC stage 1, grade 1, rads & AI Dx 9/18/2007, ILC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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May 13, 2006 10:02PM Glynn52 wrote:

Hello, hey what does MLD stand for? I have mastitis, swollen tender red left breast, s/p lumpectomy, chemo and rads.....help


Glynn
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May 13, 2006 10:30PM DoreenF wrote:

MLD stand for manual lymphatic drainage - a very gentle massage to encourage lymph flow in the direction to move from affected quadrant to the other side of the body .. LE therapists do MLD and teach you how to do it yourself...
LE is typically managed with MLD, compression garmets and wrapping.
Doreen
"Cancer May Leave Your Body, but It Never Leaves Your Life" - Lance Armstrong Foundation Manifesto. Dx 4/18/2005, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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May 14, 2006 06:23AM Glynn52 wrote:

thank you for your response

glynn
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May 14, 2006 11:30AM RobinTN wrote:

I have been doing the MLD for about 6 weeks now,I saw a certified lymphodema specialist who is also and OT and she taught me some exercises that seem to help.I wonder if this will be a life long problem or if it will eventually subside? Does anyone know/had experience?

Robin....."I wont back down".... Dx 11/3/2004, IBC, 6cm+, Stage IV, Grade 3, 1/9 nodes, mets, ER+/PR+, HER2+
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May 15, 2006 09:30AM AnneW wrote:

HI, Robin,

I'm no LE expert, but in my personal and professional experience, I've seen the gamut of symptoms. Some people have intermittent symptoms, others have it for life. I don't know what makes one person have it after a SNB, and another person never get it after a two level axillary dissection!

Anne
2002 IDC stage 1, grade 1, rads & AI Dx 9/18/2007, ILC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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May 29, 2006 10:10AM sherry7 wrote:

Ann and Robin, I am one of the few that got LE without having nodes tested or taken during a mastectomy. I thought I was exempt from this possibility and it came to be six months after surgeries. Something I was really in denial over. Can't deny what is there, darn it anyway. My goal is to be able to walk the beach, hike the hills and camp, its a whole other journey hidden behind the many veils of BC...
I wish all well who have this beast to tame, Sherry

"Plant a flower with a child and you will both grow"
let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+

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